Tuesday, April 24, 2007

CFS Tuesday

Our ongoing series about life with CFS

CFS changes everything. It's a cliche that doesn't really help you grasp how having Chronic Fatigue Syndrome forces a person to see even the smallest activity in a new way.

I've been working with a physical therapist for over a year. This week, we added walking to my home program. Sounds great? It is; I am very excited. But let me put this in perspective. The physical therapist has prescribed four minutes of walking every other day. I have to take my blood pressure (because people with CFS frequently suffer sudden drops in BP) and rate my fatigue/pain before and after the walking. My husband has to walk this four minutes with me to make sure I am able to make it back to the house.

We see this as a tremendous accomplishment.

Do you understand what I'm saying? Walking for a total of four minutes - every other day - is a huge accomplishment.

Perspective? The day before I fell ill in 1994, I was at the gym at 5 am. I walked for almost an hour on a treadmill set at a medium incline. Then I got ready for work, walked to work, and worked all day. And still had energy at the end of the day. Walking used to be my preferred way of getting around the city. Hiking was my favorite sport. Three months before I got sick, I had gone on a camping trip in the Pacific Northwest, and hiked at least 2 miles a day for 10 days.

Don't get me wrong. I am incredibly grateful that I have now progressed to the point of attempting this walking program. But this is what I mean when I say CFS changes everything. The simple act of walking is now a battleground where I fight for every step.


noricum said...

I like walking. I would miss walking if I had CFS. :(

Anonymous said...

Hi, I am the spouse of a man who is disabled with CFIDS. I would very much like to email you, if you have the time, and share some of the things we've learned in our journey with this terrible illness. My heart goes out to you, because I have an understanding of what you are going through. CFIDS is a terrible illness and like you said, it's invisible. I love the fact that you are traveling with Swatchy, and educating others through your blog.

You can contact me at d.mirabile at comcast.net
Best wishes,

Donna Mirabile

Mary Anne said...

You explain so very well just how incapacitating ME/CFS is. Thank you (and sorry I am late with a comment).